|Annie and Mikayla|
Mikayla in dedication dress
Happy Mikayla......1 year (almost) post op
I was a single mother and the pregnancy was an extremely difficult one, both physically and emotionally. I had no family whatsoever but I had so much support around me through the friends I had at my church, friends who rallied around me and showed tremendous support and advice and love. I had two of my very good friends, Bec and Jenny with me throughout Mikayla’s birth, and Annie was in the waiting room with my good friend Beryl, and I cannot begin to tell you how much it meant to have them with me. The day that Mikayla was born, which was also my exact due date, 2am on Sunday 20th January, 2008, I remember her big sister Annie coming in to see her and saying to me “look Mummy, she has 10 fingers and 10 toes” and I was so happy that I had this beautiful baby girl come and join our lives. At that moment, as I looked at my 5 year-old daughter holding her 30 minute-old baby sister and showing such love and happiness, it made everything worth it. I had checked her over from head to toe and everything was where it should be and she was perfect. I was not worried about the inside, I didn’t even consider it, because after all, the doctors did the checks for all that and they would have told me if something was wrong and the nurse told me I had a beautiful healthy baby girl.
I had chosen to breastfeed Mikayla, and I was determined to do so, though I found it to be so difficult. Mikayla only ever fed for up to around 10 minutes, occasionally she would have a longer feed, but not very often. Mikayla would go to sleep but only ever sleep up to 20 minutes, though by the time she was 8 weeks old, she was sleeping for up to 40 minutes, but that was it, and it was like that for 24 hours a day, for the first 6 months. By 6 months her sleeping habits were the same, however she now was feeding around 2 to 3 times an hour, which was a lot for a 6 month old baby, but she never fed long. I remember people telling me that she was obviously not hungry, she was a fussy baby, I was not feeding her correctly and countless other things, and yet I knew my baby and I knew she was indeed hungry and she was indeed tired, but I could not understand why she would not feed or sleep right. I mentioned to my local midwife and friends too, that Mikayla seemed to go pale when she fed and this happened a lot, but no one really thought anything of it and certainly no one suggested looking into it further. It soon became routine for us and part of the way my baby was and I got used to having only 3 hours sleep every night.
It was also a very hard transition period for Annie because though she adored her new baby sister, and loved to help with her all the time, she found herself all of a sudden having to compete for my attention after being the only one in my life for so long, and this was hard on all of us.
On Sunday 17th February, I had both my girls dedicated to the Lord at my church, and we were surrounded by friends, and I remember promising to care for them and protect them and bring them up with good values and to Love the Lord as I did. That was a very special day for us and I remember thinking, it doesn’t get much better than this.
I suffered very bad mastitis when Mikayla was only a couple of months old, and yet I continued to breastfeed knowing we would get through it, and it took weeks of pain and tears but we did get through it. Then when Mikayla was 4 months old, I got viral meningitis which turned into bacterial meningitis, and I spent 2 weeks in hospital unable to feed or care for my baby at all. It was so hard, because I was in so much pain physically but emotionally it took a lot as well. My good friend Jane dropped everything and took time off work to care for my girls and to be there for me for the first week, and in the second week, Jane had Annie for the week whilst Mikayla went to my good friend Beryl. Mikayla had to be bottle fed whilst I was in hospital, and I almost lost my milk altogether and it was very difficult and it took a long time and a lot of hard work to get Mikayla back to being a fully breastfed baby, but we struggled on each day and after a few weeks, we finally succeeded against the odds!
Mikayla continued to thrive. She was a very fast learner and was rolling and crawling much earlier than expected in babies. She loved to smile at people and was a happy little baby. Annie adored Mikayla and Mikayla adored Annie. Then at around 6 months of age, Mikayla seemed to get sick. Nothing too serious, but enough to worry because of how tiny she was. She started losing weight, she was still having feeding problems, though she was obviously getting enough to get by as doctors and nurses were not too concerned, it just meant that I was quite literally, constantly feeding her. Mikayla had temperatures, on and off vomiting, loose stools (she had actually had this from birth every single day but now it was much worse), a cough that came and went and was looking and acting quite unwell, but when I took her to doctors, I was told it was viral and she would be fine. I then took her to a different doctor, who started listening to her chest, looked at me and said, “Oh, we have a heart baby “; six words that were to be the start of a huge change to come in all our lives forever, though we didn’t know that at the time. Of course I told him, that, no he was wrong, but he told me that Mikayla defiantly had a heart murmur and an awfully loud one too, but not to worry because 1 in 20 babies are born with a heart murmur and it would more than likely fix itself as she got older. The doctor went on to say that just in case, he would send us off to have an ECG done so that we could rule anything else out, but he didn’t think we would find anything. He also diagnosed Mikayla with pneumonia and put her on antibiotics straight away. After initially panicking and calling Beryl, who was a midwife and nurse, I realized that there would be nothing to come out of panicking so I would just have to wait and see what the test results showed. We were told we would have to wait one week for our test to be done.
A couple of days later, Mikayla still had not improved, and as we sat on a bus heading into town, Mikayla started really vomiting and getting a bit listless amongst other things so I decided enough was enough and rang Beryl and arranged to meet her in the E.R with the girls.
We waited for hours, Beryl nice and calm and giving me strength, and me worried and trying not to panic or show fear in front of my daughters. I am not sure I really succeeded though. When we finally went in, the doctor we saw was so good. He was thorough and such a professional and he treated my concerns with the seriousness they deserved. He ordered an ECG to be done, and nothing showed so he said he believed it to be a heart murmur, nothing more. The fact that her heart murmur was so loud was good he said, because generally the louder the murmur, the less serious they are. He would refer us to the paediatric clinic just to be on the safe side but was not worried. Mikayla had a viral illness and it would fix itself but the chest X-ray showed she did not have pneumonia after all! That was such a relief! I left there feeling so good and happy and relieved that there really didn’t seem to be anything to worry about. We still had the feeding and sleeping issues but they had become such a normal part of our lives now that I was accustomed to it. I was used to operating on only 3 hours sleep, though I envied friends when they would tell me how well their 3 month-old baby was sleeping through the night, or how their little 10 week-old darling would feed for an hour then not again for 4 to 5 hours. How I wished that could be us!
So on the day of our appointment with Dr. Charles Kilburn in Paediatrics at Darwin Public Hospital, I had a few butterflies but hey, there was nothing to worry about. My friend Beryl was there for support and I was going to leave there feeling very silly for ever having worried!! Dr. Kilburn did an echocardiogram and Beryl helped to hold Mikayla’s arms for it. She was so upset at the indignity of it and cried and cried, and it was awful to watch, but she was not hurt in any way, just very unhappy! I wanted to snatch her up but I knew that this test was going to prove to us all that my daughter was totally healthy. I guess at this stage, I was a little apprehensive, but not overly concerned. That was until the doctor sat down with the test results. We were waiting to hear the words "She is fine, we found nothing there", but instead I was hearing the words "I am very sorry but it appears that Mikayla has something called Pulmonary Stenosis." I heard the sharp intake of breath that Beryl took for just a second, because being a nurse and midwife; she knew exactly what this was. But I didn’t. I was bewildered and confused and scared. Dr Kilburn drew diagrams explaining in great detail what it was, and what it meant, and my heart started breaking for my little girl and the more he explained, the more I feared and I cried! I was looking at her and I thought to myself "Perhaps the test results are wrong, she looks perfectly healthy, if a bit little"... but he reassured me they were correct. I was devastated! I remember tears pouring down my face, thinking to myself, how and why? We were told I would have to go to Adelaide within a month to have a cardiac catheterisation done. This means a tiny balloon on the tip of a very fine tube is inserted through the groin and run up to her heart and into her pulmonary valve, where it is gently blown up and this clears the blockage. In most cases, it is successful. I cried and was in shock at that stage. It was not until later that night, when I watched my little girl sleep, that I realized that my little girl had a large blockage in her heart and if it wasn’t fixed, she would die. But as I looked at her peacefully sleeping, it was so hard to comprehend because she looked absolutely perfect!
The days waiting to go to Adelaide were very stressful and very hard. I was scared and couldn’t stop wondering how this had been missed at birth. They are supposed to listen to the baby’s heart when they are born, and if they had done that they would have picked up on this, so how come it took so long for this to be found? It was an extremely emotional time for not only me, but for both my daughters as well as they could easily pick up on my worry. I was a single mother, how could I afford to fly to Adelaide and stay there for 1-2 weeks? I knew no one there and I was scared. I had not heard of heart murmurs, or Pulmonary Stenosis and I didn’t know anyone who suffered from any such thing. I had so many questions, which I wrote down. But I tried to be brave and not show my fears around my children, because it would not help them and worrying was not going to help. So instead, I cried and I prayed. I prayed when I was feeding, I prayed when I was bathing the girls, when Mikayla was sleeping and when she had a fever from teething. I was still so scared but I was trusting that the Lord would take care of us and protect and heal my baby. I was putting all my faith in my God, though sometimes it was so very hard.
I was very lucky because I was blessed to get in touch with a lady by the name of Irene Field. Irene was the cardiologist Social Worker at the Adelaide Women and Children’s Hospital and she was such a support for me. She arranged for us to have accommodation for my daughters and I at the Ronald McDonald House just down the road from the Adelaide Women’s and Children’s Hospital. The Variety club NT paid for my daughter to fly down and back, because we found out that it doesn’t matter if you are a single mum or not, the hospital will only pay for the sick child and 1 carer. And besides, I didn’t have anyone to care for her. We had no family, no husband, and my friends had families of their own. They would have cared for her if it came to that; however she was part of our family, and no matter what happened, she needed to be with us, with me, no matter what happened.
On Friday, 19th September, 2008, we went to Darwin Airport to catch our flight to Adelaide. I remember hugging Beryl at the airport, wishing we didn’t have to go so far away from everyone we loved. The flight was uneventful, which was good because I am actually very scared of flying, but I had to fly for my daughter so I took deep breaths and tried not too much to worry. The flight attendants were brilliant and I still remember the flight attendant, Sebastian, telling me what beautiful healthy looking girls I had, and that they would break hearts when they were older because they were going to be stunning. He was lovely, but I am glad he could not see the pain and anguish his words caused me! Beryl had given me a bag of goodies for the girls for the flight, colouring pencils, books etc and they enjoyed those and I was so grateful for them. She also gave me a beautiful notebook and a letter, which I decided not to open yet, but that notebook became the start of my diary about our journey. We were welcomed to Adelaide by friends Pastor David, and his lovely wife Kathy. They were so supportive and welcoming, and we prayed and we talked. I opened up Beryl’s letter first thing the next morning, when I awoke, and it was the most beautiful letter filled with love and compassion, quiet encouragement and strength, and it was just as if she had stretched her arms out to me and hugged me all the way from Darwin. It was not a huge letter but it was enough to let me know that even though those that loved us could not be with us, they were thinking of us. I cried again…I couldn’t seem to stop doing that! I also had a beautiful card for the girls and that had been signed by everyone at our church, giving us their good wishes and prayers. I was humbled by how much support I had and how much love these people, these friends, had for us.
We had a couple of days before we had to go to the hospital, so we spent it having a small “holiday”. We saw the beautiful sights around Adelaide, and we went up and familiarized ourselves with the hospital and where everything was. Annie met the Clown doctors who were fantastic and really cheered us all up. We met the Cardiology Social worker, Irene Field who arranged some warm clothing for the girls and I, (our Darwin jackets were just not going to cut it in Adelaide) and information about Heart Kids, as well as a family pass to Adelaide Zoo. She was so supportive and helpful to us. So later in the morning, we went to the Zoo and had a great day together.
It was wet and freezing cold (12 degrees) and we rugged up and had umbrellas and we didn’t care because we were enjoying being a family together and we needed this after the past couple of months! At one stage, we decided that we would go to feed the baby animals and as we went in, staff warned us that the babies could get a little boisterous. So we went in, Mikayla in the stroller with a bag of feed and, Annie holding a bag of feed, and the baby goats started hungrily eating the food. But then they decided that the tissues and papers under the stroller were much better so they all stuck their heads under the stroller, and then started munching on Mikayla’s jumper! Annie was getting a little frightened and I was trying to shoo them away whilst walking backwards towards the gate but darn they are stubborn animals. By the time we managed to get to the gate, we were literally surrounded by hungry baby animals, which were eating anything they could get their mouths on, poor Annie was scared, Mikayla was bopping one of the goats on the head and I was so puffed out but we squeezed out and slammed the gate shut. Then we all stood there puffing and staring at each other, pouring rain, bits of tissue all over us and we completely lost it. We laughed and laughed so hard that it actually hurt, but we stood there in the pouring rain and laughed for so long and it was the best medicine for all of us. We really enjoyed the rest of that visit!
The next day, Tuesday 23rd September, 2008, I dropped Annie off at the crèche at the hospital, which she was looking forward to, and Mikayla and I went up to see the cardiology ward. We met Wendy Duncan, a cardiology nurse, who was such an awesome lady. Her calm, positive, friendly manner was so good when on the inside I was so scared. Mikayla was weighed (8kg) and had her stats done. Wendy told me not to worry as the doctors did these catheter procedures all the time. Mikayla had full blood tests done, and a chest X-ray, and then they had to sedate Mikayla so that they could do a full echocardiogram. This was all normal, so that they could see if there had been any differences between when she had her ECG done a couple of months ago. Mikayla fought them for quite a long time, but she finally tired herself and went to sleep and they did the test, and then we waited to go in and talk to the cardiologist, Dr. Andrew Kelly. In the waiting room, there was a little boy there, aged around two years old, playing happily with his dad, not concerned about the oxygen tank that was attached to him that helped him breathe. His dad held it for him while he played and it was an eye opener. There were others the same. To know that they were all there because they had some type of heart problem was very emotional and so hard. It was hard because the children looked normal, not sick at all, if you didn’t pay attention to their oxygen tanks. There was a family that had just returned from Melbourne where their son had just had his surgery less than a week ago. I couldn’t believe it, as he looked tired but healthy! But as he went down the hallway with his dad to see the doctor, he started crying and calling out saying "No daddy, I don’t want to. No more tests, no more please. I promise I’ll be good". That was one of the most heartbreaking things I had ever witnessed.
Up until that time, I think even though I was worried, it was worry about how long it would take her to recuperate after the procedure and things like that. I honestly believed we would have the procedure the next day, and we would go on with our lives. When I walked into the doctor's room with Mikayla, the doctor was very nice, very polite and looking very serious. Dr. Kelly started asking me a lot of questions about her sleeping habits, feeding, illnesses and so many other questions until I finally asked him what was wrong. I mean, come on, it was supposed to be me asking all these questions. The news was not good. In fact, it was very bad. They had found through the echocardiogram that Mikayla was worse than they originally thought. She had Tetralogy of Fallot, a type of Congenital Heart Disease, and she needed to have open heart surgery, and just like that the bottom of my world fell away! The names and details ran through my mind. Acyanotic Tetralogy of Fallot, Left Pulmonary Artery Origin Stenosis, Right Aortic Arch, Ventricular Septal Defect, Atrial Septal Defect, minor blockages in arteries, Significant Right Ventricular Hypertrophy, additional Pulmonary Valve Abnormality, future valve replacement possibilities, but the one thing that was top of it all were the words Major Open Heart Surgery. Dr. Kelly were great. He drew diagrams, explained in detail, and answered the few questions I could manage to stammer out. When Mikayla fed from me, her oxygen flow was stifled so she could not breathe as she normally would, and sometimes when lying down, some TOF babies find it harder to breathe. TET spells, when the babies go blue and limp and their oxygen levels drop dramatically can occur, he said. We hadn’t seemed to have that. Mikayla’s oxygen levels were quite good for a baby with TOF apparently, and since she hadn’t had any TET spells and she was still being breastfed, we were lucky since so many more babies are so much worse. Well, pardon me, but right now, this was my baby and I was not feeling very lucky. I was angry, and confused, and in so much pain for my beautiful daughter. She looked fine. She didn’t look sick. How could this be? Why had no one else picked it up? Why hadn’t the ECG showed this? Dr Kilburn would send us home to Darwin to wait and we were to be referred to Melbourne Children’s Hospital for Mikayla to have her surgery. But we would have another appointment tomorrow with Dr. Kelly to have more tests done before we went home.
That night, I had to explain to my 5 year-old daughter what was happening, and she was upset but also matter-of-fact about it. I showed her the diagrams and we looked up pictures on the internet to help her understand. I had Pastor David and his wife come and visit us, which was so good because I really needed that. We prayed and prayed and I rang people in Darwin to let them know what was going on.
The next day, they sedated Mikayla with Midazolam and did another echocardiogram and explained in more detail about what we now would need to expect, and signs to watch for. She would be regularly monitored whilst waiting to go for surgery. I asked them if there could have been a mistake, maybe the machine was wrong? Apparently that is a question they get asked quite a lot! And no, the results were not wrong. It did explain all the feeding and sleeping problems Mikayla had endured for 7 months though!
We had two days before our flight home, so we kept busy, sightseeing and going out for dinner and tiring ourselves out before going to bed. I had to keep busy; I could not sit still because when I stopped, I asked questions that no one had any answers to. I felt completely numb, and didn’t know what to do or say to people back home. I had no answers. We flew home on Friday 26th September, 2008 and I knew that our life would never be the same no matter what the future held us for us. I prayed and prayed and did a lot of crying too.
Over the next few months, I went through so many different emotions, sometimes more than one of them at the same time. The shock didn’t wear off for a couple of weeks, but when it did, I felt very guilty. I wondered if it was something I had done during the pregnancy that had caused this, or something I hadn’t done. At times, I seemed to be quite forgetful of quite simple things, and found that the smallest decisions I needed to make were now that much harder. Then I got really angry. Angry at God for allowing this to happen, angry at the doctors who should have picked this up when Mikayla was born, angry at myself because it was my job to protect my baby but how could I protect her from something like this? There was no support whatsoever in Darwin for this kind of thing. There was no support group, no one else that knew what I was going through, no one to sit face to face with and talk and cry with. I received a phone call from Kylie Bath, who worked with Heart Kids SA, and I would often have long conversations with her, and she was a godsend, and she put me onto another mum in South Australia by the name of Sarah, who was mother to a heart child as well. It was so good to have these women to email and call, but I desperately wished for someone I could talk to face to face. Friends rallied around trying to support me as best they could emotionally, but it was so hard because they didn’t understand. They hadn’t been though it and they meant well, but sometimes their well-meant comments really hurt. I was frightened, trying to hold onto my faith, crying at such simple things and I remember begging God to make me sick instead of Mikayla. I would do absolutely anything to make my little girl's heart better again. It tore at me that I was Mikayla’s mother and her protector but I hadn’t protected her from this. Annie seemed to handle it well, which worried me because I could see when I looked in her eyes, that she was so worried about her little sister but she wouldn’t let it out. Once, Annie looked at me and said to me "she’s not sick because I was rough with her, is she mommy?" and of course I reassured her that no, she had never done anything to hurt her sister and we didn’t know why this had happened but the doctors would make her all better. From then on, she was pretty matter of fact about it to people. Three quarters of me believed that Mikayla was going to be just fine, and trusted God to look after my baby, but that tiny bit left questioned if she would make it. I cannot remember how many people told me she was going to be fine, and they were not worried, and I got so angry with them because we did not know for sure that she was going to be ok, and they did not know. And yet, my friends and my church rallied around to support me and help me however they could. I could not have stayed strong without their love and their support. All my feelings were completely normal and part of the process after finding out your baby has Heart Disease. What amazed me was finding out that more children five years old and younger die every year from Congenital Heart Disease than from all other diseases combined, including cancer! And yet, there were no ads about Heart Disease, no knowledge. How could something that killed so many children be something no one knew much about? The hardest thing ever to handle was the waiting as it was hell, day after day, week after week, just waiting. Hoping Mikayla would not get sicker each week, wondering if I should let people come near her with their children. I was constantly keeping her away from others who had a cold or anything else that could be passed onto Mikayla and was so over protective of both my girls. I had no control and there was nothing I could do to heal my baby. I could not put a bandage on and kiss the hurt away.
On Wednesday 22nd October, I had to rush Mikayla for urgent medical care when she had her first TET spell. She was fine one minute, playing, and the next was quite distressed and gasping for breath and changing colour. Watching your child struggle to breathe is absolute hell, and one of the worst things a parent can ever see. After oxygen though, when her saturations returned to normal, (they had been in the lower 70's) Mikayla was fine and came home again but after that, I was really careful with what I let her do. I became even more overly protective and I was constantly checking on her because I was petrified it would happen again. But Mikayla’s oxygen levels were still so good considering she had TOF and they said she was doing very well for a TOF baby. On a scale of one to ten, she was around a 5. It didn’t make me feel any better though.
I also had to attend Family Court during this time to deal with custody issues, and on top of everything else, I was constantly emotionally and physically drained. But I continued to pray, and I continued to stay strong as best as I could for my daughters.
On Thursday 30th October, 2008 we went and saw Dr. Charles Kilburn. I had friends of mine that are nurses tell me I had the best doctor looking after Mikayla. Her oxygen levels were around 92% at that stage, and that was fantastic because most babies are so much lower than that. Dr Kilburn told us we were to head to Melbourne in January, as her surgery was booked for the 21st January, 2009... the day after her 1st birthday!
Six weeks before we were due to go to Melbourne, I took Mikayla to see a doctor because she was unwell and had temperatures, and I was worried it would affect her heart somehow. We found out she had a bad middle ear infection, and she was put onto strong antibiotics straight away.
A couple of weeks later, Mikayla was still not better, I took her to the E.R again, at Royal Darwin Public Hospital, where my friend Jane met me, and where Mikayla was looked at by a doctor who was fantastic. As soon as he knew she was a TOF baby, he took us straight in and because Mikayla wouldn’t feed or drink, arranged to have syringes of water given to her every 15 minutes for a couple of hours to get her hydrated properly again. He looked her over from head to toe and did everything possible to find what was wrong, but in the end, couldn’t find anything and suggested it was another viral illness. Jane, a nurse, asked them to send off a urine sample to the lab to be tested just in case, so we then spent hours and hours with Mikayla waiting for her to give us a urine sample. We were not expecting anything from the sample though. It was so hard because I was so tired, physically and emotionally, and I was watching my baby being sick every day for weeks, her sats getting lower and lower each week, though they were very good still considering, and yet there was nothing it seemed anyone could do.
On Saturday 4th December, I changed Mikayla in the morning after a shower and I found a lot of blood in her nappy and absolutely panicked! I rang the hospital but was told by a nurse that it was probably nothing and not to waste their resources by coming in. I cannot tell you the panic and fear and helplessness I felt. I spoke to Jane as well, but in the end it was decided to wait and see. Was this something to do with her heart? Had something gone wrong? What should I do? In the end, I could not do anything so we stayed home, and I prayed.
A month later, we went to see Dr Kilburn again at the hospital, and we explained about the blood, about how Mikayla was still not well (which he could see), how she seemed so tired a lot of the time and yet couldn’t sleep very long. By this stage Mikayla had been sick for months and then Dr Kilburn looked up her test results, and finally we had an answer! He told us the urine sample sent to the lab, had shown that Mikayla had a very bad urinary tract infection, and she had more than likely had the infection for months, which was why she was so sick. If her infection had gone on undetected, it could have caused Mikayla serious kidney problems, even failure! So much for a viral illness then! My poor baby had been in pain for months and couldn’t tell me, and I felt so guilty even though I had done everything I could. How much was she supposed to go through? This was so unfair and I would give anything to kiss it all away! She was put on strong antibiotics straight away because she needed to be 100% for her upcoming surgery, and she would finish the medication the day before we went to Melbourne.
Sarah, the Heart mum in Adelaide, was so supportive to me, answering questions and listening to me and talking, and then she sent me a 4 page email, that she had obviously worked on for a very long time and it had so much helpful information to help me get around Melbourne and the hospital. I cannot tell you how much that email meant to me.
On Saturday 17th January, 2008 we went to the airport where Beryl met us. I was not really looking forward to the journey ahead and emotionally, I didn’t think I really had that much left, and I really was so tired and drained but I was keeping strong for my girls. It is amazing the amount of strength that the Lord will give us when we need it. I had no idea still why any of this was happening, and it didn’t look like Mikayla was to have a miracle just yet, so I would just have to deal with the situation at hand!
The flight went well, and when we arrived in Melbourne, I was informed that there was a room available for the girls and I at the Ronald McDonald House across the road from the hospital. God was still looking after us! But as I lay in my bed later that night, thousands of miles from home, I felt so scared and alone. I wrote in my diary, and I prayed and I considered ringing my friends to have a good sob, but decided that no, I needed to stay strong. I could not lose it now!
We had a couple of days before our preadmission at Melbourne Children’s Hospital on Monday, so I took the girls sightseeing, including to the Melbourne Zoo. We had so much fun and a part of me felt guilty because I couldn’t help but think that there was a chance that this might be the last time we got to do this together as a family. I watched Mikayla playing back at the house with her sister, and laughing and crawling around and just being such a happy little bundle of joy, and I looked at her and thought to myself, "This is it. This is true love. I would do absolutely anything, give anything to save my daughter, and it is tearing me apart to know that she is so sick and there is nothing I can do." Then I prayed that there would be many more days like this one. As I sat there watching Mikayla playing with Annie, I was thinking how much I wanted to see her take her first steps, ride her first bike and have a first day at school. I wanted to see her grow up and fall in love and and be walked down the wedding aisle to the man she chose to spend her life with. I wanted her to have a child herself and know what it felt like to love a child with every fibre of your being, with every single part of your heart and soul, knowing you would die for that child if it meant they could live.
On Monday the 19th January, we went up to the hospital for our preadmission appointment at 7am and spent an exhausting full day there. There were so many tests, blood tests, and ECG, urine tests, more blood tests and we were supposed to have an echo done as well. I did try to tell the staff that Mikayla would need to be sedated for the echo; however they decided to do it without sedating her. She was fasted for four hours, which may not seem a lot, but remember this is a girl who fed for very short periods (5 to 10 minutes each feed), 3 to 4 times an hour, so 4 hours was a very long time and she cried and cried and cried, and an hour and a half after the time she was supposed to have the echo done, they said sorry, it won’t be done today. I tell you what, for the first time in almost a year, Mikayla fed nonstop for half an hour and it was sheer bliss for the both of us. We were both in tears and stressed and tired. But sadly, that is part of preadmission at the hospital. Sometimes things get cancelled, even surgeries. They told us that they would not cancel our surgery though, unless absolutely necessary because we had travelled all the way from Darwin. The preadmission staff members were fantastic. They were patient, polite, caring and compassionate, and despite having seen it all before, they were not jaded or cynical. They answered all my questions, every single one of them, treated Annie kindly and patiently and we were treated with respect and professionalism the entire time. I thank them so much for that! It was a truly overwhelming experience with so much information given to us that I simply could not process it all. We were shown the PICU and the Cardiology Recovery Ward, as well as around the hospital. We met the Special Care Nurse in PICU that would be caring for Mikayla after her surgery and I couldn’t help but think that this lady would be doing my job, caring for Mikayla and helping her get better. On the way home, we went and bought a birthday cake because I was determined that Mikayla would celebrate her first birthday which was tomorrow. She would have to be fasting from 11am so that she could go to the hospital in the afternoon and have her echocardiogram done, but that was ok.
The next morning, the 20th January, 2009 we celebrated Mikayla’s birthday. Annie had so much joy giving Mikayla her birthday presents and there was another little boy staying at Ronald McDonald House who also had fun joining in. Mikayla seemed so tired and really did not have a lot of energy, but she had recently started standing up and walking a few steps while holding onto stuff, so she was always doing that trying so hard to walk by herself, but she never quite had the energy to make her little body do it. That day though she had so much fun, and even though she didn’t eat anything, which was not unusual for her, she had lots of fun playing in her Dora the Explorer cake! And at ten to 11, I packed the cake away and fed her once more before she was fasted again, but she fed for only 5 minutes! A couple of hours later, we went over to the hospital where Mikayla was sedated with Midazolam for her echocardiogram, and she had an ECG and an X-ray. It all went fine and they told me that we couldn’t leave until after she woke up because they needed to make sure she woke up and didn’t have any adverse reactions to the sedation. The nurse told us that most babies woke after about two hours; however it was a very long wait for us. Poor Mikayla, her body decided to take full advantage of the fact that for the first time in a year, she was sleeping soundly and so she slept and slept and slept, and finally after four hours, she woke again, but then promptly fell asleep again a few minutes later. It was so good though because her tiny body really needed that. She woke again an hour later to the relief of us all because we were starting to get worried! She was very groggy for most of the night and I had to be very careful not to let her stand while holding anything without being right next to her in case she fell, and it was so good for me to have something to do, something to help my daughter with, if only to make sure she didn’t fall and hurt herself! Mikayla was to feed until 1am, then no feeds and only water until 5am, then no liquids whatsoever. It was to be an extremely hard, tiring, upsetting night for us all and my heart was breaking through the night at Mikayla’s crying. She could smell my milk, and was so hungry but could not understand why she could not feed. Poor Annie was crying because she hated to see her baby sister so upset and there was nothing I could do except cuddle her and wish that it was all over! Finally when it got light enough we all went for a walk together to enjoy the sunrise and this helped to calm us all down. This was the big day! As we walked along, I quietly asked the Lord to keep Mikayla in his arms today, and to give me the strength I was going to need for both of my girls this day. I told God that I didn’t want him to take my little girl up there to Heaven just yet, but I also asked him to give me the strength to deal with whatever his plans for Mikayla were. I also asked him to guide the hands of the surgeon who would be holding my little girl’s heart in his hands that day. I prayed a lot while we quietly walked along together, and when I saw that sunrise that morning, it was the most beautiful special sunrise I had ever seen. Annie kept very close to me as well, and was so quiet that morning. I think it was only just sinking in what was about to happen to her sister, but she was so brave.
At 7:30 we went up to the hospital and I remember that I questioned how I could possibly be walking when I was shaking so much and I felt like my legs would crumble under me. I took our portable laptop for Annie so that she could watch DVDs and play games etc. during our long wait. Annie had eaten breakfast but not me; I could not stomach anything by then and I had let Annie eat away from her sister so as to not upset Mikayla anymore. We waited in the waiting room until midday playing games and reading books and I tried not to let my fears show at all. The waiting was so hard on all of us. At noon, we took Mikayla down to the room where she was changed into a hospital gown, and I hated it. I wanted to put her clothes on her, pick her up and run as fast as I could, but I couldn’t so I stayed, playing with her, watching her give cuddles, and she continued to smile and chatter having no idea how much of a battle she had in front of her. Annie sat quietly at the little table set that was there and played with the blocks. She was so quiet and trying so hard not to cry, and my heart ached for her as well because she was hurting for her baby sister. Then the time came, and they came to take Mikayla, who was quite happy to go off with them, and we were all crying as they took her down the hallway and she was waving goodbye to us with a beautiful smile and I stood there, holding onto Annie so tightly, praying for a miracle, so frightened and hurting and dreading the day to come and hoping that this was not to be the last time I saw my little girl alive. Then Annie and I went down to the waiting room where we would spend the next seven hours waiting for news. It was the longest most terrifying seven hours of my life. I wanted so much to have Beryl and Jane there to give me a hug and tell me it would be ok. Annie was so upset that she buried herself in the laptop and didn’t say a word, but that was ok because that was how she was dealing with it. I read and reread the magazines but didn’t actually remember a single word, and in the late afternoon Annie and I went downstairs so that Annie could have dinner and then we went back upstairs again to wait some more. Finally, at 7pm, they called me to say to come straight up to PICU.
I am not sure what I was expecting when I got there, but what I got was a shock. My little girl was so tiny and still, not moving at all. There were so many wires and tubes and lines, and she was so swollen! She was intubated on a ventilator (a machine that breathed for her), had a chest drain, arterial lines, CV lines, multiple other tubes and lines, pacing wires (wires gently attached to her heart so that they could restart it if necessary, and looked so tiny and fragile in that big huge bed. They were giving her Morphine, Heparin, Spironolactone, Dobutamine and aspirin as well as other medicines and pain relievers. There was so much to take in and I didn’t dare touch her, but finally I did. I rest my finger on her cheek and gently stroked her face reassuring myself that she was here, alive, and was going to get through this. I felt so utterly helpless, unable to do anything but be there next to my daughter, while she lay there so still and swollen. Annie held her hand so gently and that was so important for her, to be able to see her sister and know that she was alive. The nurse there was so good and answered all of Annie’s questions about her sister and really made us both feel so comfortable about her being there. I expressed my breast milk for Mikayla to have when she was allowed fluids again, and it was such a relief but the pain had been welcoming as well. I guess I wanted to share some of my little girl’s pain and this was as close as I would get, and by expressing my milk, I was able to do something for my little girl, something I had control over!
That night, Annie and I went for a nice walk together before settling down for the night and I didn’t think I would sleep very well because it was so strange not having Mikayla with me, and I was desperately worried something would go wrong, but after 12 months of only sleeping three hours a night, I slept that night all night like the dead. My body finally got to sleep and recover.
The next day, 22nd January, Mikayla was doing so well that they extubated her (took her off the ventilator) late in the afternoon and I cannot tell you how thankful I was to see her breathing on her own, even with oxygen. We could touch her and talk to her and encourage her to fight and get stronger. Mikayla was quite agitated and grizzly when she was awake and that was very hard to deal with because it was so hard to see her so upset, but she always settled down when I snuggled up next to her or when Annie came and laid her hand next to her face and told her sister how she loved her. Annie spent most of her time watching DVDs though but she checked on her sister every now and then. This was very hard for a 5 year old to deal with and understand. They let me pick up my daughter and cuddle her around lunch time, and it was the greatest feeling in the world to have my little girl in my arms again. I looked at her, surrounded by tubes and wires, and thanked God for bringing her back to me. God had given me the miracle I asked for, because he had provided those surgeons with the skills they needed to repair my daughter’s heart so that she could come back to us. I cried as I sat there holding Mikayla, surrounded by wires, machines, beeps and noise, Annie sitting at my shoulder and feeling such a profound feeling of overwhelming love all over again for this tiny gift from Heaven. Then the staff said the most beautiful 7 words I had heard in a long time: "You may feed her if you like". I didn’t hesitate for a second, and Mikayla didn’t hesitate either. I sat there thinking how lucky and blessed I was to be doing the most natural thing in the world, breastfeeding my baby, watching her little brown eyes staring at me and feeling the warmest most comfortable glow in the world. At 6pm, Mikayla was transferred to the Cardiology Recovery Ward, and I knew it was going to be ok. My little fighter was going to be just fine, and she was going to grow in strength and recover and be back to her mischievous self in no time!
By the next day (23rd January) Mikayla was eating small amounts and breastfeeding, but what was even better was that she was feeding once every four hours. Mikayla was a lot more alert now and not as grizzly and most of the swelling had subsided now too.
I met Tracy Stanley who is the Heart Kids Family Support Worker for Heart Kids Australia and she was fantastic, and a tower of strength. She had bought a gift and a card for Mikayla and we went along to the morning tea and support group she held each week there in the hospital for Heart Kids families.
The next day, (24th January), Day 3 post op, Mikayla was sitting up and smiling and trying to chat to whoever would listen to her. She was also trying to crawl around the bed with her leads and was getting quite cranky and frustrated that she couldn’t go anywhere. A few times she pulled herself up to stand and gave me such a beautiful look as if to say, "See mum, and see how well I am doing?" It was great and amazing and overwhelming all at once! We found out that day that Annie, being 5 years old, was allowed to be signed into the Starlight Room and I could leave her there where she would be cared for and I could pick her up later. Wow, I wish I had known about that much earlier. Annie was quite happy to go off and had so much fun painting, face painting, singing and dancing and being a child having fun again. It was so good for her. At night, when Annie and I left the hospital, we would go for a nice long walk together and just enjoy each other’s company. We would talk and cuddle and then go back to the room at the Ronald McDonald House, where I would make my routine nightly call to friends in Darwin to give them an update before we would head off to bed. I was scared that something may go wrong, but elated about how well Mikayla was doing and each night as I prayed, I thanked the Good Lord for what had happened, and for everything I had. I really had so much to be grateful for and so much to live for and Mikayla was going to have a very powerful testimony.
On Sunday the 25th January, 4 days post op, Mikayla was given some pain medication and had her chest drains and pacing wires taken out, as well as most of the other tubes and wires as well. Each morning when the staff came to take a blood test from her, Mikayla just sat there and let them and even chatted to the staff as they were doing it. Mikayla was starting to be her usual bubbly self, with only occasional grizzly episodes. Each day, I would spend time with Mikayla, and then when she had a sleep, I would take Annie downstairs or to the parent’s room for lunch, before returning to Mikayla again. Annie was so well behaved and I was so darn proud of her. I wished Jane was there to see what a fantastic little girl I had! I kept writing in my diary each day, and I took photos of Mikayla as I had been doing since the beginning. One day I would show it all to Mikayla. Annie painted me a beautiful picture while she was in the Starlight Room, of herself in a garden smiling, and I put it in my diary. It was good to see her smiling again.
On the 26th January, 5 days after her full Heart Repair, we were given the most fantastic news! Mikayla was allowed to come back to the Ronald McDonald House with her sister and me. We were not allowed to fly back to Darwin for another week, being so far away, and would need to go back to the hospital for checkups but as we left the hospital that afternoon and walked back to the house, I felt like I was ten feet tall. I was taking my family back to my room and I was eating dinner that night with both my girls and we would all sleep together that night (in the same room). The staff had placed Mikayla’s pacing wires in a special container for me to take home, and I am so grateful for their consideration and thoughtfulness. It means so much to be able to give those to Mikayla one day and let her know that these tiny wires were attached to her heart.
Later that night however, I was overwhelmed with the feeling of homesickness I felt, and I was so worried all night. I was so happy that Mikayla was with me but what if something went wrong? What if something happened? Could I cope by myself now with her? I was her mother but had no medical knowledge. Later, I found out, these feelings too were completely normal. The next few days passed in a bit of a blur, with mixed emotions, sometimes worried, others so grateful to have my daughter back. I found that I felt so good to be in control again and to be doing what I was supposed to be doing, caring for my daughter’s needs. The littlest things like giving Mikayla a bath at night meant so much to me and Annie was also very protective and loving of her little sister.
On Saturday 31st January, 2009, 10 days after Mikayla had her Major Open Heart Surgery, we said goodbye to Melbourne, and flew back to Darwin. We were greeted by our friends Beryl and Julie at the airport and it was so good to be home again! We were given such a warm and loving welcome at church the next day, and I had so many emotions at that time because whilst I was glad to be back home, it was scary too. There was no round the clock medical care at home and it was up to me to make sure my little girl was ok again. We threw a huge welcome Home/Happy Birthday party for Mikayla at the church and it was a fantastic day!
On the 26th February, we had a call from Dr. Kilburn. He had sent off a sample of Mikayla’s bowel motions after she started to have black motions and it was so scary. I was petrified that something else was going wrong, and I prayed and prayed. Dr. Kilburn told us Mikayla had tested positive for Salmonella…the poor darling, as if she needed anything else! There was nothing to do but let it run its course. I also started to think about how there was no support here in Darwin for families that have a child with CHD and I prayed about it and started thinking that I wanted to change that. I started to look into what would need to be done to start a support group here in Darwin and what I could do to help other families that went through what we had just gone through or worse. I made so many calls, and spoke to countless people gathering information and statistics. I remembered just how much the ladies from Heart Kids had done for me, but there was no Heart Kids in Darwin, and I wanted to help others as I had been helped.
The best news was that Mikayla started walking on her own! She finally found the strength to get her up and going and her determination and drive completely amaze and overwhelm me. As Jessica, our pastor said, Mikayla always wanted to get up and go, she just never quite had the strength to do so, but now because of Melbourne Children’s Hospital, and especially Dr. Christian Bizard, Mikayla’s Cardiac Surgeon, Mikayla had the strength to do whatever she wanted and was getting stronger every day.
On Thursday 22nd March, we saw Dr. Charles Kilburn and a visiting cardiologist, Dr Gavin Wheaton, who told us that Mikayla is recovering extremely well and they are very pleased with her progress. Mikayla still had some narrowing of her valves, but it was nothing to be concerned about, and she would have her murmur for life. They told us that perhaps she may need to have patch repairs and/or valve replacement done, but the chance was very low and if it did happen, it would not be for many years. We are to see Dr. Wheaton in November when he comes back to Darwin, and Mikayla will have regular checkups with Dr. Kilburn and this will be the normal for her for the rest of her life. She has shown such determination and great progress. I also mentioned that I was going to start a support group for other Heart families and they were very supportive.
Well, now it is August 2009 and Mikayla is doing extremely well. She is 18 months old now, and in very good health and progressing better every week. We see Dr. Kilburn every 3 months now and the visiting cardiologist again at the end of the year. With the support and love from my church and friends, I did indeed start a support group for families here in the Territory with a child that has been diagnosed with a Congenital Heart Defect. The Support Group is called Heart to Heart Playgroup and Support, and it is held on a weekly basis during school terms, as well as occasional weekend get together and events. I have 3 regular families that are involved with the group and they are just as passionate as I about this group. We want to expand our group as much as possible, offering a variety of support to their families here in the Territory who are going through what we have all been through. The Heart to Heart Playgroup and Support is not my group. It is our group, and it is a group run by families who know exactly what you are going through. We are about to hold a fundraiser in August to raise money for Heart Kids Australia.
I am sorry if my story has been so long, but you see, I wanted to tell it from the beginning. I wanted to try and let you share our journey with us, share some of what our feelings were, our highs and our lows. I want to try and help you understand what it has been like and that there has been more to Mikayla’s story than just the hospital visits. I hope I have managed to do that. Please remember that no two heart stories are ever the same and every child with a form of Congenital Heart Disease, or Acquired Heart Disease for that matter is just as special as the next. If my story can help someone understand what it is like to have to make a journey like this, especially if you didn’t find out about your baby’s CHD until later than life, then I have succeeded in why I wanted to share this with you.